A Preemie Child
After the NICU, New Roles For Parents Of Children Born Prematurely

By: Allison Martin, MPA; Preemie-Child Listowner

Parents will find that they must also coordinate activities across medical specialists, among educational professionals, and with other support services to ensure continuity and to focus resources effectively. Traditionally, pediatricians coordinated medical services, treatment and specialists for parents. Unfortunately, caseload and financial considerations make this difficult for even the most attentive pediatrician.

3. Parent as Librarian.
As in the NICU, documentation is important for the care and treatment of a child with special needs, but now it is the parent’s job to keep track of it, and perhaps even to create it. The types of documentation needed include the child’s medication history, school contacts, school plans and tests, professional and support contacts, milestones, personal goals, legal documents, hospital and doctor records, illnesses, diagnoses, treatment plans and so on. Early on, a parent advocate should set up a system of folders to organize this information. Keep a detailed baby book as well, it will prove invaluable in the future. As often as possible, try to get documentation directly from the professionals who work with the child. You may need to make a special
request, but most people are glad to provide this. Doctors can be requested to address questions and provide diagnoses in letters, which can then be used for meetings with school personnel or other professionals. Many specialists will send a copy of their assessments and progress reports to the parents. Some will not, however. When parents visit the child’s pediatrician, they should check the file to see if any new information from specialists has arrived. The parents may wish to raise some of the issues right on the spot. In any event, parents should be sure to get a copy to take home and review.

Parents will want to create a chronology or history of their child’s issues, setbacks and progress that they can update over time. Usually, the NICU discharge report provides a good starting point. The focus may change for each doctor or issue, but often pieces can be reused. This medical summary will become a very useful document for both you and your doctors for years to come.

4. Parent as Communicator
If a child has many or significant special needs, the parent will be working with experts and professionals for a long time. However, unlike the NICU, they may be in a situation where they know more about certain issues than do some of the people with whom they are interacting. As often as possible, the parent should try to get different members of the team to talk to one another. Doctors may be requested to call each other or write short summaries. Therapists may be able to meet or talk by phone. The parent may need check back to make sure that the connection is made.

Parent now find that they have a new job as translator. Doctors, teachers, therapists, specialists, support groups, literature and personal observation all provide information which the parent will want to pass on to others on their team. Often, professional jargon, models, and treatment from one area of expertise may not be familiar to an expert in another area. Since the parent can rarely gather the whole team into one room, a major part of the job will be to learn from the specialists and transfer information from one person to another.

Your first meeting with a new doctor will be more effective if you can provide the relevant reports, a summary of your child’s medical history, current medications, and your questions and goals ahead of time. Their time is expensive and limited; this professional courtesy helps tremendously to focus your visit. To continue good communication down the road, many doctors and specialists are willing to answer simple questions over the phone from established clients.

5. Parent as Monitor
Once you have set up your team, it is essential to monitor your child’s progress, including the implementation of your child’s treatment plan (and in preschool the IFSP or in school the IEP). This involves a variety of tasks. For example, parents should keep in touch with school therapists and teacher(s), provide feedback to their doctor on medications and other health issues, and talk to the therapists about treatment progress and goals. This may feel uncomfortable, but it is important.